Touching Lives - June 2005

Keeping doctors up-to-date

Although introduction of folic acid supplements has been successful in reducing the incidence of spina bifida — thanks in part to earlier research funded by Action Medical Research — it still affects around 1 in 1,000 pregnancies.

Until now, doctors have had relatively little information to give to parents faced with a diagnosis of spina bifida. It has been very difficult for them to answer accurately the questions that any parent would ask — such as whether their child will be able to walk, go to school, make friends, and so on. Much of the information they had was simply out-of-date. Therefore, Action Medical Research has funded a feasibility study, to be carried out by a team at the University of Oxford, which will establish what kind of information might be available, and how it can be used to help parents in this difficult situation.

^Significant advances in the way medical researchers can access information and contact former patients have made this study possible. ^For example, the team plan to follow up children born with spina bifida in the Oxford area in the 1990s, to find out how they are getting on. This will provide lots of useful information about how new treatments and different techniques for managing the condition have improved the outlook for spina bifida patients over the last 30 years.

The team will also, where possible, examine ultrasound images to see if they can establish any connections between what can be picked up during pregnancy, and the eventual outcome for the child. For example, the presence of certain features at this stage may indicate particular types of disability when the child is born.

If the study shows that useful information can be gathered using these techniques, then the team hope to conduct a larger, nationwide study with the ultimate aim of ensuring doctors have accurate, up-to-date information to give to parents faced with a diagnosis of spina bifida.